It is World Heart Day on Sept 29th – a day to create awareness about heart issues. This usually springs up thoughts about cholesterol or heart attacks or open heart surgeries and such – everything associated to an adult facing heart issues.
Now let me share my story.
Tragedy in my life opened my eyes to a stark reality. A reality I wish no one should ever face.
Like many expectant mothers, I too was eagerly awaiting my life-changing experience – that of being a mother and all that came with motherhood. And indeed I did have that life-changing experience for more reasons than one.
I was blessed with a beautiful baby girl on Feb 7th 2016. And with my pregnancy a cake walk, and a normal delivery I thought I had all that was needed for a great start to this beautiful journey.
But my happiness was short-lived and the journey painful. It has scarred me for life!
My daughter was born with a rare congenital heart defect. I had heard this term for the first time when I worked on my first story on Child Insurance Policies as a business journalist. All I knew at the time was that policies excluded children born with congenital heart defects.
My first thought, when the news was broken to me by doctors and my husband, was my child will not get any insurance cover ever. But of course that brief thought was soon overcome by shock and grief and pain.
Imagine, holding your days old baby only to hear that she has to undergo a heart operation! It all seemed so cruel and unreal. We were in the hospital for 3 months, and multiple hospitals at that. The thought of why me or why us, soon faded after seeing the countless number of parents standing in queue in the hospitals trying to give their child a chance to live.
We realised how clueless we were to this world of Paediatric Cardiology! I dint even know that such a super specialised field existed.
We had all the mental, physical and financial support and yet we were broken. But there were many families that we saw almost every single day battling to make their ends meet.
An 11 year old boy from Mumbai was undergoing his 4th surgery in a year under life-threatening circumstances, his family had made Noida their home for close to a year and had even sold their house, another woman from small town in MP had her new born in the hospital for close to 5 months facing staggering bills, asking me if I could help her get some funds.
I could go on … We managed to raise funds for these two families while still in the hospital with our own daughter, only because we could understand and relate to that pain.
But fate was not by our side and our daughter left us after a painful journey of four months.
This journey, however, made us realise that there are many children out there who don’t even get the chance to fight because of lack of means. I heard a startling story of a little girl whose family had limited means and the earliest date they could get in a public hospital for an operation was for 2019! Sadly the girl didn’t survive to get that chance.
And its not the fault of public hospitals, they are working round the clock doing more than optimum operations in some cases. (I am talking about Delhi and not smaller towns here).
The numbers are staggering – it is roughly estimated that around 2,20,000 children are born with congenital heart defects in a year in India. While most heart defects are curable after surgery, due to lack of awareness and funds many children continue to succumb to it.
We believe our daughter Aara came into this world for a purpose, she wanted to show us this world where many kids suffer due to congenital heart defects and how their families struggle financially to save the little hearts.
And for that we gave birth to our daughter’s purpose – THE AARA PROJECT
We collaborated with Genesis Foundation, as we witnessed first-hand during our time in the hospital the exemplary work they are doing in the field of congenital heart defects. We aim to raise funds under the Aara Project and add to the pool of Genesis Foundation. 100% of the funds raised are being used for assisting children for their medical needs.
The Aara Project was launched on Feb 7th 2017, my daughter’s first birthday and in the last 6 months with the help of friends, well wishers and CSR funds from one of the leading insurance companies we have been able to support 19 kids already.
Aara means bringing light to our lives, and my daughter has already enlightened us and will continue to brighten lives of many kids in the future.
I share this personal story to lay emphasis on the fact that there still remains a huge gap between the number of kids who need assistance and the funds available.
There is minuscule to negligible CSR that comes for the cause of congenital heart defects and therefore its important that you contribute to SAVE LITTLE HEARTS!
To know about the stories of kids under The Aara Project, go to: http://www.genesis-foundation.net/AaraProject.aspx